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POTUS, Data and How to Increase Your Likelihood of Success

February 25 marked one year since the advent of the President’s Precision Medicine Initiative and the White House marked the anniversary by hosting a PMI Summit, including a panel discussion in which the POTUS himself participated (and moderated by The Atlantic’s James Hamlin, who also made a great video about the initiative*). In POTUS’s own words, the PMI’s aim is “to figure out how to break down some of the structural or institutional barriers that prevent us from making the big leaps over the next several years,” and it was exciting to hear him discuss a few items that are near and dear to me (and probably a few of you).

Data is key.

Precision Medicine is built on data. The PMI specifically is looking to recruit a one-million-member cohort of volunteers who are willing to submit their genomes to science. (You can follow the progress and get information about volunteering here.) $130 million alone has been dedicated to designing and building this cohort, which will be as representative as possible of the US’s population on dimensions of “social, racial/ethnic, and ancestral populations living in a variety of geographies, social environments, and economic circumstances, and from all age groups and health statuses” (http://www.nih.gov/precision-medicine-initiative-cohort-program).

But data living in silos and behind walls is not enough – it must be accessible and shared.

To me, this is the most exciting part. Unlike almost every other study out there, the data from this cohort will be available and shared across any researcher who’s interested (and adheres to privacy guidelines, of course). Obama noted, “if we’ve got a million samples that are accessible to researchers from all across the country and all around the world, and they’re all able to at least shorten the lines of inquiry and collapse them so that they can eliminate those things that are less likely to work and pursue those things that are more likely to work, before you start getting into the more detailed aspects of the research — that ends up being a cost saver.” There are a couple of things to like here. The first is that researchers across organizations can collaborate to make those better decisions rather than making them in their own silos. The second is that collaboration and sharing can actually help everyone from pharma companies to patients save money in the long-term.

I’m the first person to admit that government programs are often more aspirational than practical, almost always create more bureaucracy as they aim to create less, and sometimes build bridges to nowhere. But I also keep thinking that a program like this – as ripe as it could be for privacy issues and abuse – just might – maybe! – put the right information in the hands of the right scientist on the right hour of the right day and something amazing will happen, and some of us will get a little more time or joy with someone we love.

*Be warned: This video may break your heart a little bit when you learn of the husband-and-wife team that’s gone back to school to earn PhDs at Harvard Medical School to try to cure the disease that may claim the wife’s life.